Getting Back In Shape

[Brye]

It's been almost 2 years since I have been diagnosed with POTS. I can no longer work. I'm trying to reduce the # of pity parties I have for myself and have been trying to get back into shape. I've passed out walking with my babes in the neighborhood, fainted at my last PT appointment, and have even fallen off my eliptical running maching. My last ER visit the dreaded "do you really think you should even be driving" conversation came up. I have a loop recorder and so far there have not been any toxic arrhythmias that have caused my syncope. I need some ideas on what activities you all do to stay active. I was once a college athlete and now I can't even get a walking work out in!

Also I was wondering if anyone has done a cardiac rehab program. This has crossed my mind as maybe a safe place to work out where there would at least be someone older than 2 to help out.

Thanks!

A very frustrated Brye

[flop]

I'm sure that someone did post a while back about cardiac rehab (try a forum search). My physiotherapist is pulling her hair out trying to find some exercise that I can do without blacking out. She is a rheumatology specialist (for my EDS) and has a special class for rheum patients but they can't do any sort of cardiac or BP monitoring. People with fainting or unstable BP are automatically barred from the group. She came up with the idea that I could do cardiac rehab first so that I can be closely monitored. Unfortunately at my hospital the cardiac rehab is only funded for people who have had actual heart attacks - other cardiology patients are barred!

I can't join a gym (no-where wants to take on the liability of having a member who faints frequently). My cardio suggested buying myself a treadmill (expensive!) but as I can hardly walk one block it would be pretty pointless - I might as well use the free pavement outside the house. Actually I do make an effort to walk every day, I try to go window shopping most days as a way of ensuring that I have walked and that I have got out of the house.

Some people have found swimming very effective as you are horizontal and the water also supports your BP. Other options are recumbent bicycles or recumbent exercise bikes (I think MightyMouse has one of these?).

Flop

[ramakentesh]

Horizontal exercise might be a good idea - a couple of push ups on your knees slowly increasing.

Swimming is great but when i was really bad I made the mistake of pushing it in the pool and nearly fainted swimming while horizontal and then when I got out it was like my blood weighed tonnes and I couldnt stand without nearly fainting instantly. I had to call my partner to come pick me up which was quite hard on the ego.

yeah i got told off for driving - maybe im the hyper type but the stimulation of driving quite often made POTS come on when I was bad.

[firewatcher]

I'm not the fainting type, but there are several articles that point to the success of tilt-training. That would be a first step. While you work on that, you might do some supine exercises: leg lifts, pelvic tilts, etc. Just go super slow! It is a very gradual thing. Ernie recently posted about how she went from bed-bound to dancing! Good luck!

[kayjay]

I have also fallen off my eliptical and I am not a "fainter". My advice is to not push yourself too hard. For anyone who ever played competitive sports this is such a challenge. I am going to tell you what I am doing and maybe it will help you.

I no longer allow myself to work out for X amount of time. You have to stop when you feel like you should... this is so hard. I used to think in terms of "45 min on eliptical" etc.

I bought a Polar heart rate monitor and wear it when I exercise.

My goal every day is to get on my recumbent bike for up to 20 min ( right now). If I need to get off sooner I do.

I also do pilates then take a Yoga class once a week (focusing on flexability).

I have a leg strap and use it sitting to do leg work. There are some really good Pilates DVDS. I also use hand weights while sitting (when hubby is watching TV) and work on my back and arms ( only 3-5 lbs).

Exercise when you feel best... Mayo clinic told me to do this... don't say "I am going to work out for "x"amount of time at ___ 'o clock.

For me this is often around dinner time. Sorry that you have this struggle ... I hate feeling/ being so out of shape! I really think that pilates is a great help. I was always stong and never flexible. Now I am sadly weaker but can touch my toes! Good luck to you!

[erik]

Getting strength in your lower legs especially will help the muscles and veins in your calves get the blood back up to your head, and can actually help reduce your symptoms.

This is one of the key things for me. I've got beefy legs and I think without them I'd not be able to manage by moving around. I can usually stave off fainting by moving... using the "musculoskeletal pump". At my worst, it might not be enough, and I will usually still get exaggerated sympathetic stuff after more time but nonetheless it is critical.

Some recommend resistance training to the lower body... and definitely activities that build up (and heavily activate) those muscles like brianala mentions might be especially helpful/doable. It might not be what you're wanting eventually, but resistance training might jump start and enable other activities.

This great thorough overview article on Orthostatic Intolerance identifies the muscle pump as the primary defense against gravitational forces and mentions that it is "often likened to a second heart".

[Kitsakatsa]

You people with the ellipticals!! I would fall off on purpose just to not be on it. Those things tick me off. They look fun, but then you get on them and OMG!

My best exercise has been walking in big places. I walk in the hospital I work in: no hills, perfect temperature, chairs everywhere, elevators, coffee bar on the first floor, make fun of people's clothes, its all good. Maybe find a mall to walk in? It would be easy to rest and there are usually a bunch of seniors, so its not like you would be the slowest one.

I don't know, this is a big struggle for me too.

Kits

[lifesaver]

I have been pondering exercising everytime I button my one pair of jeans. There is a pool at a hospital, it is 20 bucks a month and the water is 90 degrees or so. If I get too hot, that is one situation when I pass out. Walking for too long a time--and I can't figure out what is too long--it varies so much, it also causes severe muscle weakness and collapse and/or syncope.

I want to exercise. I have trekking poles that really help with my balance, proprioceptive system problems. I was walking 3-8 miles a day in 2007.

I take meds that cause me to gain weight--which is becoming a health issue in my perspective even though the doctors have said nothing.

We can't afford any exercise equipment to use at home. I have mall walked a bit--but usually overdo it. For me, doing much of anything equals overdoing it.

I do have problems other than dysautonomia--my neuro thinks it is a symptom of a neurological disease. I used to be so flexible and stretched an hour or so a day. Now stretching causes pain in my legs, gentle stretching does not cause pain in normal muscles. I do use the stairs in my house--but just a few times up and down and my legs hurt and I am worn out.

I am just tired and feel like a blob.

[Brye]

What great advice from all of you!!! Thanks so much for responding!!

Lifesaver ... I have that blob feeling too! That truly sums it up and I must overcome it. I blame some of my weight gain on fluid retention from meds but not all! A lot of it is just inactivity for me!! My stroller kind of acts as my trekking poles when walking.

Kits ... How can you not love an eliptical!! So low impact and smooth!! I would take that over running every day. I actully used to mall walk all the time with the seniors in the area. They all loved my babes. I've become blobby and lazy though and it's so much work dragging them in and out of the car. Their stroller is almost more than I can handle itself!! I do walk in the neighborhood sometimes though and the kids love it!! I'm hesitant though after passing out with them.

Erik ... Thanks so much for the article info and advice!! I had strong legs before this and have lost almost all of it. Maybe that's also contributing to my problems! I'll have to work on that once I figure out a work out routine!

Brianala ... I was a rollerblader before my POTS. Love that you are able to do the roller derby thing!! I will rollerblade again but I need to get the fainting in better control! We have some good hills in the neighborhood and it makes a great work out!!

Kayjay ... I do have some pilates videos and that's a great idea as well!! Love their 10 minute work outs!! That way if I get too tired there are frequent stopping points!!

Firewatcher ... I don't know much about tilt training. I'll have to look into that a little more!! I'm not bed bound yet but I would love to go from blobby to dancing myself!!

Ramakentesh ... Do you still drive? What I hate are the doctors who tell me not to drive but won't offer any advice or even try to help with treatment options. My last ER visit I heard the cardiologist say to the ER doctor ... there's no cure and theres really nothing we can do for her. Thats a line of bologna ... there's not cure but there are lots of treatment options and sometimes all it takes is a med adjustment.

Flop ... did you find an exercise you could do without passing out. If you have please share!! I'm afraid to swim because the thought of the 15 year old lifeguard pulling me out of the pool makes me more ill. The hospital here has a cardiac maintenance program for those who have completed there cardiac rehab. Supervised work outs 3 times a year for 15$ a month plus the membership fee for the gym. I'm heading there tomorrow to see if they'll take me. I'm hoping at a hospital work out facility they won't turn down a fainter. We'll see!

Thanks to all of you for your support!! GREAT SUGGESTIONS!!!!! Good luck to all of you in your fight to control your symptoms!!!!

Brye

[firewatcher]

Here's an article on tilt-training:

Medscape: tilt-training

I must say, the images for counter-manuveurs are not as physically clear as the ones put in OUR last newsletter (if I do say so myself!)

[juliegee]

You people with the ellipticals!! I would fall off on purpose just to not be on it. Those things tick me off. They look fun, but then you get on them and OMG!

My best exercise has been walking in big places. I walk in the hospital I work in: no hills, perfect temperature, chairs everywhere, elevators, coffee bar on the first floor, make fun of people's clothes, its all good. Maybe find a mall to walk in? It would be easy to rest and there are usually a bunch of seniors, so its not like you would be the slowest one.

I don't know, this is a big struggle for me too.

Kits

Make fun of people's clothes and have a cup of coffee. You are too funny. I want to walk with you!

Julie

[flop]

My younger sister got me to go ice skating with her earlier in the week. I managed 3x 20 mins on the ice which is much longer than I could usually stand or walk for. I think the cold helped to constrict my blood vessels. Everyone else was in layers of jumpers and coats - I was just comfortable in a lightweight top!

Flop

[scarfgirl]

I would think a good physical therapist could find something for you to do. Mine gave me a ton of exercises that you can do lying down. She really helped me figure out which exercises I could and couldn't do. Now I have a number of exercises I select depending on my symptoms that day.

[ramakentesh]

Ramakentesh ... Do you still drive? What I hate are the doctors who tell me not to drive but won't offer any advice or even try to help with treatment options. My last ER visit I heard the cardiologist say to the ER doctor ... there's no cure and theres really nothing we can do for her. Thats a line of bologna ... there's not cure but there are lots of treatment options and sometimes all it takes is a med adjustment.

I have to drive for work and sometimes I probablhy shouldnt be - its hard for people to realise that Id drive better drunk than i probably do when Im really potsie. Last year I had to stop for three month sbecause there was no way I should have been driving.

[erik]

its hard for people to realise that Id drive better drunk than i probably do when Im really potsie.

It is likely true (assuming a very light intoxication) but I would broach this issue cautiously with public folk and patrol officers!

And your prior descriptions that your symptoms tend to subside when leaving for a vacation and get worse upon return to work can be easily taken out of context too

[Guest tearose]

I think of my exercise plan like a group of selections. I do what I can depending on my symptoms that day. When weak, I use the floor exercises and do leg lifts, bottom crawls, air kicks. When I am able, I can do more, sometimes even walk on a treadmill. I don't use one specific program because my body is unpredictable.

The key is to try not to ever get out of shape. As you know staying conditioned as mentioned earlier, is essential. You will get back into your groove. Just try different things that "feel" good as you try them.

best regards,

tearose